Neighbors: IC sufferer helping women across the country

SUSAN D. BRANDENBURGPonte Vedra Beach 543-0730

Published Monday, March 10, 2003

While she lives with chronic pain, Noelle Farris of Ponte Vedra Beach has much to be joyful about these days. Last year, she made a hard decision to share the intensely private details of her rare illness in a newspaper article. "Never doubt the power of the written word," she says. "Since the article about Interstitial Cystitis came out in the Ponte Vedra Beach Shorelines edition of The Florida Times-Union, I've helped many other women cope with this frightening disease, and now, a new support group has formed." Through the miracle of the Internet, with on-line archives of newspaper articles accessible worldwide, Farris has helped women from as far away as New Jersey, Pennsylvania and Vero Beach, as well as local women from Ponte Vedra Beach, St. Augustine and Jacksonville. Her disease, Interstitial Cystitis (IC), is a chronic inflammatory condition of the bladder wall which causes frequent urination (up to 60 times a day in severe cases) and excruciating, unrelenting pain.

Until recently, IC, which has no known cause, no clear-cut diagnostic test, and no cure, was labeled by many physicians as the hysterical women's disease. "I saw five doctors before I was diagnosed," remembered Farris, "and I got the feeling from a couple of them that they thought I should be describing my symptoms to a psychiatrist." With symptoms that are similar to other conditions such as bladder infection, endometriosis and kidney disease, many women suffering from the rare disease are misdiagnosed, misunderstood and, indeed, become hysterical -- even suicidal. "There are treatments available, including a special diet, that can ease the pain, treat the disease and give women back a certain quality of life," says Patty Jones of Jacksonville, an IC sufferer who got in touch with Farris after reading the newspaper article and has since established the new IC Support Group. "You have to be proactive and determined to find the answer to your illness, because there are few doctors out there who recognize it," said Jones. According to the IC Web site ( www.ichelp.org), a 1987 epidemiological study by Dr. Philip Held, Urban Institute in Washington, D.C., revealed that "IC patients are four times as likely to consider suicide as the general population, and scored worse on quality of life tests than patients undergoing renal dialysis. Sixty percent of IC patients experienced pain with sexual intercourse; some so severe that they abstain entirely." Farris notes that the average time it takes for women to be diagnosed with IC is four to five years. "Women lose their jobs, their marriages, their minds and their will to live with this disease. I'm one of the lucky ones," she says. "I have a loving family, a loving God, and, now that I've shared my story with others, I have a support group." Since finally being diagnosed two years ago, Farris has adhered to a rigid diet, which has relieved her most severe symptoms. It is a diet of exclusion. "No more Chinese, Mexican or Italian," she says, "and forget wine, beer or anything except water to drink." Chocolate is an IC no-no, along with most cheeses, fruits and nuts. Small amounts of condiments such as mayonnaise, soy sauce, lemon juice and salad dressing can result in days of horrible pain. "It's a matter of discipline and daily pain management," she says. "There are many women out there who are suffering needlessly, eating things that cause their undiagnosed IC to flare up in the worst pain imaginable -- it's like pouring salt on an open wound." The new IC support group meets quarterly, with dual goals of providing support and education to fellow IC sufferers, and eventually finding a cure for the rare disease. "Patty Jones, through starting this support group, is building a network of IC victims who can give positive support to each other and share ways of coping with the disease. It's exciting and encouraging!" says Farris. The next meeting of the IC Support Group will be held at Memorial Hospital on University Boulevard in Jacksonville on April 24, at 7 p.m. "It's open to all women who suspect they may be IC victims, and also to their family members, because it truly impacts the family as well as the sufferer," notes Farris. For information, call Farris at 826-4379 or Patty Jones at (904) 645-3277.